I really don't know where to start.
I was sick from Thanksgiving till New Years.
in and out of the hospital a few times.
most of you already know the details on my hospital stays so I'm not going to go into that. My last hospital stay ended early January, after being discharged I basically moved into the ICU waiting room at Columbia Presbyterian in NYC. I had to be with Cindy. I spent countless days and nights at her bedside. tearing my heart apart by the minuet. watching my best friend go through this. it was more then I can even explain.
I always imagined she'd get her lungs in time. I wasn't prepared for this. I......I will get back to this blog later.
TO BE CONTINUED...
Resuming:
I always thought she'd get her lungs. losing Cindy was never an option. never a possibility. I knew she had CF, and I knew her life would be shortened. but it was not supposed to happen now. she was supposed to get those lungs. she SHOULD have gotten those lungs. I blame the Hospital in so many ways and due to my emotions, I am going to write them all out.
: They waited FAR TOO LONG to list her, they kept giving her excuse after excuse. they waited until she was on her death bed before a doctor from St.Joe's called and told them to get their fuckin acts together.
once listed she got a few false alarm calls. One of those calls, SHOULD have been hers. The donor family consented to organ donation, but the decided they didn't want to donate the lungs. for God knows what reason. I was beyond furious. once she was in the hospital, dying, they chose to put her on ECMO, and put in a TRACH to help her breathe. Cindles began having seizures and was taking a long time to wake from sedation. so the ingenious hospital decided she was no longer fit for transplant due to minimal brain activity. Even though the girl was still squeezing my hand, and saying that she wanted the transplant.
I was not prepared for this. Seeing her that way. Being there, Holding her hand, crying with her family.
hugs. prayers. tears. whispers. love.
I spent 2hrs talking to her from 4am-6am the day we lost her. She shared some of her wishes, and planning things we would do in her honor.
holding her hand and watching her slip away. was the hardest expirence of my life.
I'll never forget her. Ever.
Breathe Easy Cinthia
8/17/89-1/12/12
Saturday, January 28, 2012
Monday, December 5, 2011
This Losing Battle - poem
My heart has been yanked from my chest.
My lungs struggle to take a breath.
My vision fades, I drift away.
My mind is gone, its in a trance.
There are spoken words I cant comprehend.
The world spins fast around me.
I crumble.
Something deep inside me cracks, my soul shouting, "just let go".
I know I should, there is nothing left.
but then your voice comes through the wind.
Convincing me to try again.
I stand once more, to face the world.
And I fight this losing battle.
This fight is all I've ever known.
The war is something I call home.
but I won't give in, I won't say "quit"
not until the pieces fit.
and if they do, if that time comes,
I'll march to paradise by the sound of drums.
When my mission is complete, and my journey through,
With wings blazing, I'll watch over you.
My lungs struggle to take a breath.
My vision fades, I drift away.
My mind is gone, its in a trance.
There are spoken words I cant comprehend.
The world spins fast around me.
I crumble.
Something deep inside me cracks, my soul shouting, "just let go".
I know I should, there is nothing left.
but then your voice comes through the wind.
Convincing me to try again.
I stand once more, to face the world.
And I fight this losing battle.
This fight is all I've ever known.
The war is something I call home.
but I won't give in, I won't say "quit"
not until the pieces fit.
and if they do, if that time comes,
I'll march to paradise by the sound of drums.
When my mission is complete, and my journey through,
With wings blazing, I'll watch over you.
Thursday, October 27, 2011
A Heavy Heart
As many of you know I lost an amazing friend last night.
a friend who has touched the hearts and changed the lives of literally thousands of people. The person I'm talking about is of course, the beautiful and courageous Rachael Wakefield
Rachael's fight was a long one. She has been ill since she was 13. and has been on oxygen since then. She fought hard with her lungs never letting them defeat her. on March 11th, 2010 Rachael finally received her double lung transplant, the gift she'd so desperately needed. It was a difficult recovery, but as with everything, Rachy overcame and was 'healthy' at last. Unfortunately, it didn't last. One side of Rachael's diaphragm became paralyzed due to her being on the ventilator for so long after surgery, this paired with the immunosurpressants made her very susceptible to respiratory infections, and pneumonia. In addition to this, Rachy also developed Primary Pulmonary Hypertension.
Rachy fought so very hard throughout her 23 years of life. Her smile and spirit were contagious. My prayer had been that as her time came she would float to Heaven peacefully as the angel she already was. And she did. And I am thankful that she is no longer struggling to breathe, or fighting off pain. I'm comforted knowing that she is at peace. But I will never stop missing her. She was a true gift to this world. Her bravery will not be soon forgotten. Her spirit and her legacy will live on. I was so honored to call her a friend and proud to have met her. The sky shines brighter now as the heavens have gained a most brilliant star.
Breathe Easy, Fly Free, Rest Peacefully.
Rachael L Wakefield
Live Life then Give Life.
Be an Organ Donor.
Links:
Rachael's Legacy
News Tribute to Rachy
http://www.youtube.com/watch?v=gbQfBupI2Cg
Friday, September 30, 2011
Help me save my best friend!
I have a wonderful friend by the name of Alan.
Alan is 27yrs old with a wife & stepson.
Alan also has Cystic Fibrosis.
He lives in the United Kingdom and has been denied transplant there due to blood clots. Now I'm working to get him here, to the USA to have a transplant at Duke University Medical Center. Alan's lung function is currently around 20% and he often needs to use supplemental oxygen to keep him going. Every time Alan gets sick his life is put in danger. Every time he needs IV antibiotics he has to go into the hospital, putting him greater risk of infection. Please join me in this race against time & against Cystic Fibrosis. To support Alan in his mission for New Lungs!
In the event Alan is denied transplant at Duke the money that is raised will be donated to the Cystic Fibrosis Trust to help make CF stand for Cure Found!
Click Here to make a donation!
Click Here to join the group on FB
Friday, September 23, 2011
Fuck You FOWA
So yeah, As many of you know I've been looking for another dog.
I want one smaller than skutch but I don't want a dog that bounces when it barks....thats a rat, not a dog.
My mom & I had somewhat decided on a Norwich Terrier, that is until my mom saw a dog up for adoption by FOWA (friends of wayne animals) in the paper. her name was Venus. She was a Spaniel/Pekingese mix. estimated about 5-6yrs old. I contacted FOWA imidately. After quite a few phone calls & emails to them I finally got a reply via email, which simply said "Venus will be at PetCo in parsippinay tomorrow from 12-2" by the time I read the email it was 11am on the day she'd be at PetCo. I jumped out of bed and told my mom who was excited to go and see Venus. I showered and we headed out the door. We got there about 12:23. walked up to the FOWA table and waited. and waited. and waited. and waited. The people running it clearly cared more about their conversation then talking to prospective families for their animals.
after about 10mins a woman comes over to us and says "can I help you?" to which my mom politely replies "we were wondering if Venus was here?" the woman says "dog or cat?" I jumped in, "she's a dog, I was told she'd be here" the woman, already moving on to something else says "I only do cats."
Frustrated we walked away, we didn't leave though as we were very anxious to meet Venus. A few mins later I saw a teenage looking girl in a FOWA shirt, I walked up to her and asked her about Venus, she, was very helpful and very friendly. I was glad to finally have someone helping us. She called the foster mother of Venus (who happens to be the VP of FOWA) I'm informed that they're on their way.
About 1:40ish my mom decided she was gonna go walk Skutchy around outside, as she is walking out the door guess who she walks into. Venus & handler. Right away we started talking. She instantly handed me Venus. I fell inlove. We all chatted for over an hour, during which time I filled out the adoption application. Everything had gone great. They needed to talk to Skutchy's vet to make sure we were good dog owners then they would set up a home visit.
The next day she called me asking if they could come by that night with Venus for the home visit, and since my mom was out of state I had to ask them to hold off until wednesday. What I'm assuming happened is that between that Monday morning and Wednesday evening when they were set to come for the visit, is that they had done the home visit with the other family and pretty much decided on them.
Anyway, wednesday came, Venus came for her visit. I loved every minuet of it. She had stolen my heart.
I was aware that they had other applications. but the last thing they had said before leaving was "we'll talk to you on saturday" (which is the annual FOWA dog walk)
Less than 24hrs later they called me, and said "we have decided to let Venus go to another home, we really want your dad to be on board with this. You and your mother seem great and you're obviously good dog owners, so once your father is on board give me a call and we'll set you up with a dog"
In my head I'm thinking "I don't want a DOG, I want VENUS!" but all I could do was say "ok" and cry.
The second I hung up I called my dad, who was VERY angry. He told me to call them back and see what I could do to change their minds. I called, but I started crying halfway through the voicemail I was leaving and hung up. I then gave the phone number to my dad who called himself, saying "How did you know I wasn't on board? you NEVER asked me if I was on board! all you asked is if I was surprised, which I was. But what does me being on board with it matter? Its my daughter's dog, not mine!" They returned his phone call. And guess what, They ALREADY gave Venus away!!! How absurd is that?! I'm almost positive they had already given her away before they called me. My dad was obviously furious. He demanded to know why they even bothered to come the night before, and if it was just to look for an excuse to give me as to why we werent getting her. The woman then changed her story and blamed Skutchy! She said that Skutch growled at venus. (did I mention that she has another dog also and said herself that it growled at Venus occationally over a bone) well when Skutch growled, ONCE, it was past 7pm, Skutch had not been fed, and Venus was drinking out of his bowl. so Yeah! he was a little confused. but did he attack her? NO! did he even get up from his spot on the couch? NO!
I'm beyond upset. I cant believe this all happened. None of it is fair.
I've also been informed of an even more absurd story involving FOWA that happened to a friend.
I'm now looking to North Shore Animal League. and I really hope no one else gets hurt by these people at FOWA.
Venus <3
Penelope, the dog we're now looking at.
I want one smaller than skutch but I don't want a dog that bounces when it barks....thats a rat, not a dog.
My mom & I had somewhat decided on a Norwich Terrier, that is until my mom saw a dog up for adoption by FOWA (friends of wayne animals) in the paper. her name was Venus. She was a Spaniel/Pekingese mix. estimated about 5-6yrs old. I contacted FOWA imidately. After quite a few phone calls & emails to them I finally got a reply via email, which simply said "Venus will be at PetCo in parsippinay tomorrow from 12-2" by the time I read the email it was 11am on the day she'd be at PetCo. I jumped out of bed and told my mom who was excited to go and see Venus. I showered and we headed out the door. We got there about 12:23. walked up to the FOWA table and waited. and waited. and waited. and waited. The people running it clearly cared more about their conversation then talking to prospective families for their animals.
after about 10mins a woman comes over to us and says "can I help you?" to which my mom politely replies "we were wondering if Venus was here?" the woman says "dog or cat?" I jumped in, "she's a dog, I was told she'd be here" the woman, already moving on to something else says "I only do cats."
Frustrated we walked away, we didn't leave though as we were very anxious to meet Venus. A few mins later I saw a teenage looking girl in a FOWA shirt, I walked up to her and asked her about Venus, she, was very helpful and very friendly. I was glad to finally have someone helping us. She called the foster mother of Venus (who happens to be the VP of FOWA) I'm informed that they're on their way.
About 1:40ish my mom decided she was gonna go walk Skutchy around outside, as she is walking out the door guess who she walks into. Venus & handler. Right away we started talking. She instantly handed me Venus. I fell inlove. We all chatted for over an hour, during which time I filled out the adoption application. Everything had gone great. They needed to talk to Skutchy's vet to make sure we were good dog owners then they would set up a home visit.
The next day she called me asking if they could come by that night with Venus for the home visit, and since my mom was out of state I had to ask them to hold off until wednesday. What I'm assuming happened is that between that Monday morning and Wednesday evening when they were set to come for the visit, is that they had done the home visit with the other family and pretty much decided on them.
Anyway, wednesday came, Venus came for her visit. I loved every minuet of it. She had stolen my heart.
I was aware that they had other applications. but the last thing they had said before leaving was "we'll talk to you on saturday" (which is the annual FOWA dog walk)
Less than 24hrs later they called me, and said "we have decided to let Venus go to another home, we really want your dad to be on board with this. You and your mother seem great and you're obviously good dog owners, so once your father is on board give me a call and we'll set you up with a dog"
In my head I'm thinking "I don't want a DOG, I want VENUS!" but all I could do was say "ok" and cry.
The second I hung up I called my dad, who was VERY angry. He told me to call them back and see what I could do to change their minds. I called, but I started crying halfway through the voicemail I was leaving and hung up. I then gave the phone number to my dad who called himself, saying "How did you know I wasn't on board? you NEVER asked me if I was on board! all you asked is if I was surprised, which I was. But what does me being on board with it matter? Its my daughter's dog, not mine!" They returned his phone call. And guess what, They ALREADY gave Venus away!!! How absurd is that?! I'm almost positive they had already given her away before they called me. My dad was obviously furious. He demanded to know why they even bothered to come the night before, and if it was just to look for an excuse to give me as to why we werent getting her. The woman then changed her story and blamed Skutchy! She said that Skutch growled at venus. (did I mention that she has another dog also and said herself that it growled at Venus occationally over a bone) well when Skutch growled, ONCE, it was past 7pm, Skutch had not been fed, and Venus was drinking out of his bowl. so Yeah! he was a little confused. but did he attack her? NO! did he even get up from his spot on the couch? NO!
I'm beyond upset. I cant believe this all happened. None of it is fair.
I've also been informed of an even more absurd story involving FOWA that happened to a friend.
I'm now looking to North Shore Animal League. and I really hope no one else gets hurt by these people at FOWA.
Venus <3
Penelope, the dog we're now looking at.
Tuesday, September 6, 2011
Saying goodbye & more
looks like I'm going to have to leave my job.
I'm not entirely sure how I feel about it.
I love my job, truly. I just cant really handle it anymore.
looking for a new job, something in photography, phlebotomy, or even a secretary.
I feel like something is missing from my life. I really cant figure out what it is.
I do know I'm missing my CF friends. I know that distancing myself is the best thing for me. But it still saddens me that I cant be as involved as I'd like to.
Medically have been having issues. Just not been much into discussing it.
I have to say I'm thankful for my friends who have been supporting me through this shit time in my life.
I love you all
I'm not entirely sure how I feel about it.
I love my job, truly. I just cant really handle it anymore.
looking for a new job, something in photography, phlebotomy, or even a secretary.
I feel like something is missing from my life. I really cant figure out what it is.
I do know I'm missing my CF friends. I know that distancing myself is the best thing for me. But it still saddens me that I cant be as involved as I'd like to.
Medically have been having issues. Just not been much into discussing it.
I have to say I'm thankful for my friends who have been supporting me through this shit time in my life.
I love you all
Saturday, August 27, 2011
Update
hey everyone,
yeah its been awhile,
I've been going through a lot of hard times and just not been up for anything really.
been suffering from depression really bad. did some time in a mental health program, changed some meds around. etc. I'm still seeing a psychologist & psychiatrist.
some medical issues have come up but I'm not going to go into that.
I'm just really messed up emotionally right now and I don't know where I want to be in life.
incase you havnt noticed I deactivated my facebook, the world of CF is far too overwhelming right now, and I can't handle anymore sadness/loss/sickness/grief in my life.
I love you all.
yeah its been awhile,
I've been going through a lot of hard times and just not been up for anything really.
been suffering from depression really bad. did some time in a mental health program, changed some meds around. etc. I'm still seeing a psychologist & psychiatrist.
some medical issues have come up but I'm not going to go into that.
I'm just really messed up emotionally right now and I don't know where I want to be in life.
incase you havnt noticed I deactivated my facebook, the world of CF is far too overwhelming right now, and I can't handle anymore sadness/loss/sickness/grief in my life.
I love you all.
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